Kind of at a loss as to how to start and write the blog tonight. Chuck’s parents have been in town for a few weeks to help including helping with bedtime. Since I usually blog when I sitting with Gabriel after he goes to sleep I feel behind on the stuff of “blog world”.  I’ll start with the latest on seizure activity and health.

Gabriel had 3 seizures today. 2 of them were drop seizures followed by what I call the 1/2 tonic clonic. Tonic clonic are what you think of when you hear seizure.  The 2 seizures today including the tumors and rhythmic jerking but he is somewhat aware and tries to move but can’t totally control his movements. Frankly, they just stink! We haven’t seen these for several weeks. G was having tons of these right before Chuck’s parents came to help.  Until today G had been having 1 tonic, clonic during sleep at night usually between 4 and 6 a.m.  I was excited when he didn’t have one last night….I need to learn not to be excited about this….the last 2 times he didn’t have one at night the next day the 1/2 things started.  Hoping today is the only time we see them.

In the meantime, we are moving forward in our preparations for our trip to John’s Hopkins in Baltimore.  We are supposed to get all of Gabriel’s medical records and bring them with us. The doctor will look at them while we are meeting with him.  From what I understand at this point, Gabriel won’t have any tests, blood work, etc done while we are there.  I wish I were more excited about the trip. I am nervous about any changes that might be made because most changes bring about tough times before they get better.  I am glad we are going…figure the more eyes we have an Gabriel’s case the better.

We have made it 2 days without any seizures! Yippee!

This is the first time we have been able to say this since early September, possibly late August.  Gabriel’s doctors added an extra snack to his day.  He is now eating 7 times a day (4 meals of 238 calories and 3 snacks of 100 snacks for a total of 1250 calories per day give or take a few calories). We think the extra calories, which are intentionally higher in oil, right before bed are helping a lot.

He is being a typical 3 year old and showing a stubborn streak with eating lately. We have several snacks that he will eat but meals are a different story. Over the last couple months he had stopped eating his egg meals, his pancakes, his waffles and his “cheeseburgers”. Seems like every couple weeks there is something else he refuses to eat.  There have been several days in the last couple weeks, in which he has only eaten pizza for all 4 meals! UGH! I asked our nutritionist about it and she said while it wasn’t ideal, it is ok,  the most important thing is that he is eating. She also said he will probably get sick of it quickly and want something else. HA!!!! Clearly she has not had a picky eater living in her own home yet 🙂  Adding the snack and the insistence on tons of pizza has led to me spending a lot more time in the kitchen. Thank God for our pizza angels and Grandma in town!  I tried a new version of pancakes with macadamia nuts tonight and he ate 1/2 of them….not perfect by far but hopeful none the less.

While his stubbornness on eating is ramping up to all time highs with eating,  the medicine is FINALLY (after over 6 months) getting better. He is still not taking it willingly but he will at least open his own mouth now for us to syringe the medicine in. HUGE HUGE HUGE step! Having Grandma in town to hold his hands while I give him medicine has also been wonderful!

I keep hoping to write an entire blog about how totally blown away and thankful we are for all of the continued support…….it is just amazing to walk into work and have a gift bag sitting on the table to bless my family, or an envelope with a gift card handed to me in passing, or going to the mailbox and finding real mail or a package or a yummy meal to feed the growns up, especially Grandma and Grandpa Russell,  who have taken weeks out of their lives to come help us. THANK YOU!! THANK YOU!! THANK YOU saints!

Gabriel had a really great, energy packed, pushing all the boundaries day.  We got to say ‘no’ and ‘stop’ tons of time because he was doing normal 3 year old things, throwing blocks,  trying to stand on a toy truck, hanging on mommies leg as she tried to cook. He has had 3 good days in a row now. He is running, wanting to play outside and even trying to pedal his big wheel! woo hoo!

I took him to one of his favorite places…a model train set up in a storefront at a mall near our house.  He has loved it since he was little.  there are several trains running throughout the store.  he always ran right in and would run from one set up to the next.  when his epilepsy started he used to go and sit by one display in the corner and watched the trains go round and round while having lots of little drop seizures. we were sad he wasn’t running around but glad that he still felt joy in one of his favorite places. When we went today Gabriel was back to running around looking at every train and didn’t even glance to the corner he used to sit in.

So… we are thankful for a good today.

I am writing at the end of a very good day for Gabriel! He was energetic, spunky, even a little naughty at times…pushing boundaries. But in our world…this is good because it means he is feeling good ( I don’t think our cat that got pounced on would agree…but at least she got an apology). The highlight of my day was when Chuck got home from work  and he, Gabriel and I all laid on the floor wrestling and laughing.

Gabriel made it all 3 days of preschool this week! First time since the first week of school! Yippee! He got to be the first person in his class to bring something for the “Mystery Bag”.  His teachers encourage non toy items and the child makes up clues for their classmates to guess. Gabriel chose to take purple earbud headphones. His clues were 1. they plug in. 2. you use them to listen to music 3. they are long

Grandma Gaye snuck in and took a picture for me. I love that he is smiling  and alert. Grandma said he even answered his classmates guesses with yes or no. I laughed at the irony of the headphone shirt I had chosen for him to wear (totally by accident).

He has had 2 days with only 1 seizure…yippee! WHAT? Am I really excited about a day with a seizure? well, I guess so, because it is much better than double digits and we are headed in the right direction. We have added some extra calories at the end of the day and that seems to be helping.  We are now testing his ketones with a blood meter (like diabetics use). It is incredibly helpful in getting realtime readings on his ketones. These numbers helped us communicate with the doctors that led us to deciding more calories is what he needed.

We are so blessed by a fellow doose family who shared some extra testing strips they had. At this point our doctors will not prescribe them and they are $5 per strip. UGH! Hoping the doctors at John’s Hopkins will be more open to listening to us on this. It is confusing to us why our team won’t prescribe when it is clear from the various reputable sources and parent boards that many, many keto kids have the blood meters.  Oh well.

In other non medical news, we have had a wonderful week recouping, catching up and even relaxing a bit with Chuck’s parents in town.

Gabriel has loved helping Grandma Gaye in the kitchen.

He has played a lot with Grandpa Frank, including some very important gardening.

He even helped Mommy and Grandma build a cabinet for Daddy to store his school stuff in. (I have to admit I did teach him to say “Girl Power” after the ladies of house completed the task.)

The big song in my mind this week has been:

On Christ the solid rock I stand, all other ground is shifting sand.

The last few days have been exhausting at best. We are now in 10 day of seizures. Boo! On Sunday, Monday and Tuesday he had over 20 each day. We went to the ER Tuesday for 6 hours and left with no answers or resolutions.  The ER was super busy and we could not get the doctors to listen and look at his chart. After 4 of sitting in the room with no medical professionals coming to see us at all. A nurse came in and said they were going to prep him for an IV and a catheter. At this point Chuck insisted on seeing a doctor and asking why.

A new doctor had come on shift and thank God for that! He FINALLY looked at Gabriels notes from his doctor and…honestly I am still so mad about how everything was handled up to this point I can’t type it out without loosing my religion.

yesterday was better, but still not good. He only had 5 or 6 seizures . We got a message from Gabriels doctor that some of the blood tests from Saturday and Monday (yep 2 of them…hospital messed up 1/2 of them on sat so we had to go back on Monday) showed that g was probably out of ketosis (what the diet does, that slows down his brain) at some point and he body just needs to get back in a steady groove of ketosis.  they think the strep followed by the antibiotic probably caused this.   in the meantime gabriel is very irratible 1/2 the time and will only eat his snacks and pizza.  The pizzas are precious, precious because they are time consuming to make and we have amazing friends who help us with them.    I can’t be like a normal mommy who feels frustrated that her kid won’t eat what i make because he has to eat. so we are blowing through pizzas like crazy. My only choice is to syringe oil, butter or cream.

Needless to say it has been a tough go, the last several days. we have had A LOT of extra help from my parents and amazing friends offer to help in anyway. I am getting better at knowing what to ask for an accept it.  Chucks parents are currently on the road drive up from Texas to be reinforcements.  So glad help is on the way.  I realized on Tuesday, that the hardest days for me are when he is having lots of seizures and won’t let me comfort him.  I spent hours this week hovering over a child who was unstable on his feet but determined to move and play.

Yep, turbulent is the best way to describe the past week. Multiple time this week I have thought…’hold on, it’s gonna be a bumpy ride’. We’ve had several ups and downs.

Gabriel has had several big seizures this week. Most have been during sleeping hours Tuesday, Wednesday and Thursdays night. He only got to go to school on Tuesday. Thursday he had a seizure that I think of 1/2 and 1/2 (start with a quick gasp, then small lip tremors and staring) while eating dinner. I was worried this was a sign the drop seizures were coming back but so far so good.

Last night was tough because he had a 7 minute seizure. We used his emergency medicine (Valium that is administered rectally) after 5 minutes and it still took another 2 minutes to fully stop. Once we use the emergency medicine, we are supposed to call 911 if another seizure occurs. It is difficult to sleep when you know an ambulance trip to the ER is one possible jerk away.

On the upside of life, G and I got to go to a pumpkin patch with my mom’s group. We go every year and it is always a fun trip. It is so nice for me to see my other mommy friends and to watch G play next to kids he has been playing with since they were months old. Gabriel got to play on a huge tube jungle gym (the kind they have in fast food restaurants). It was great to see him climbing and crawling around in the tubes.  We don’t go to fast food places because he still misses and asks for french fries.

He found a perfect little pumpkin that fit right in his hands.  He carried it around faithfully all day.

The other HUGE up this week, were the airline ticket vouchers that arrived via Fedex. They are for our 2nd opinion trip to Baltimore in November.  We had applied for them late last week,  through a partnership between John Hopkins and Southwest Airlines.  Go Southwest! (always loved them…now even more). Especially glad to have this visit set up after our tough week.

Gabriel had a great and busy week. I know we were busy because my “lets go anywhere” kid just wanted to stay home yesterday 🙂 I feel like we have the original Gabriel back. He wants to be outside all the time (technically right now in the garage, with the doors open), his run looks somewhat cordinated (as opposed to a control state of falling), asking to read lots of books, chatting up a storm and asking me to sing about EVERYTHING! He literally asked me to “Sing about the closed library” yesterday. 🙂

He continues to have a blast a school. It is clear to me how good it is for him to be around other kids without mommy around. It has been fun to see him interacting with other children at the library and park this week, I can tell he is getting to used to talking and playing with other kids. He and a little girl at the library negotiated how to share the lego castle without any adult involvement! woo hoo!

We made it 8 days with no seizures, when he had 1 small (gasp)and 1 big (1 1/2 minute) last night. This is consistant with pattern of several days without and a few days with seizures. I am expecting seizures for the next few days and will be pleasantly surprised if I am wrong.

We have started the process of getting a 2nd opinion from a doctor at John’s Hopkins in Baltimore. Our doc here recommended it and we think a 2nd set of eyes on our case will be great. we have an appointment set for early November. We would ask for prayer as we firm up all the details… insurance, flying, lodging, food for g.

****** as I was finishing typing this blog last night Gabriel spike a 103 degree fever. He has been feverish and tired all day (Monday) but has not had any seizures. whew! hoping to get the fever under control so he can go back to school on Wednesday. praying the fever subsides and his appetite returns.  He is several hundred calories short and since the fat from his food is the major component of stopping the seizures we are concerned. ********

hee hee. kind of random picture…but I love it. so great of both my boys. showing off their shirts from a doose fundraiser. (An amazing woman who is working hard to fight the battle for doose kids and epilepsy in general sent them to our family. I have one too but someone had to take the picture).

I am happy to report that Gabriel has had an action packed, fun week! He has started school, spent lots of time with nonna and papa, and talked mommy into taking him to the zoo on sunday…for the sole purpose of riding the train.

yep, there he is, in his adorable conductor outfit! a friend gave it to us as a hand me down a couple months ago but i just got around to getting it out on sunday morning. g had to wear it immediately! we ended up at the zoo after a good 1 1/2 of him asking me if every train he had ever ridden was open. i was frantically searching online to see if any trains were open in kansas city at 10 on a sunday morning…. when it struck me….the zoo! yipppee! i barely had asked him if he wanted to go when he bolted out the car and climbed in his car seat…fully decked out in conductor gear and refusing to leave it at home.

he has super excited to realize conductor bear was also wearing overalls 🙂 i can’t even tell you how cute this little outfit is. thank you friends for passing it along!

while the week, was good and full of fun, gabriel did have several small seizures, all at night and at home. i think about 10 in total over 4 days. right now we are on day 5 without any….so we are expecting some in the next day or so…the pattern right now seems to be 7-9 days with none, then a few days with them.

so with g’s event filled week and me starting back to school, i am exhausted.  good reasons to be tired but i am tired. as i was putting gabriel to bed last night, i was thinking i just want “REST”. then the verse ‘come unto me all who are weary and i will give you rest’ came to mind.  happy sigh. oh yeah…you can find peace in the middle of crazy. then a song from church camp popped into my head….thought i would share it 😉

http://www.youtube.com/watch?v=bBA0N_MA6bY

sorry for the lack of capitals in this post, the shift key on computer is not working.

This  is my second blog post of the day but I could not contain my excitement about an adventure that Gabriel and I had today. Chuck had to work all day and G was in a “no, NO, no, no.” mood. Thankfully my Dad asked if we wanted to come meet them for a bike ride. I got the first “yes” from G all morning when I asked him if he wanted to see Nonna and Papa.

It took me a good 10 extra minutes to gather all the food and extra supplies that keto and epilepsy require. Feeling a little sorry for myself that leaving the house for 3 hours means packing a cooler with 2 pre-made meals and various medications.

It was a perfect day for the park, cool but not cold and sunny. G had fun playing on the equipment and riding in the bike trailer.

While at the park, I realized that we were blocks away from one of my favorite pizza places and I had packed a pizza for Gabriel’s lunch. He has seen us eat this pizza multiple times and did not seem bothered by it.

So with my parents on board, we hatched a plan. I went to the restaurant first and ordered the pizza and drinks, so we wouldn’t have to wait long once Gabriel got there. He did great, sat and ate his pizza, then as soon as he was finished eating he wanted to get up and roam around the restaurant.

I had to laugh at myself a little, as most mom’s of preschoolers would not be so excited about taking their child to a restaurant. But I was! His typical preschool behavior helped me remember that I am not missing much not having him with me on the rare occasion when I eat out.

Nonetheless, this was a HUGE step for me. I don’t think we will eat out often but after 6 months of not stepping into any eating establishment with him, I am glad to know it is possible. Every little bit of normal we can get as we battle these seizures is wonderful.